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Tuesday, November 29, 2011

Behind the Veil

I'm sitting on the crinkly paper in an exam room at the Cancer Center, wearing the ubiquitous polka-dotted cloth johnny, waiting for what feels like the millionth doctor consultation.

I can feel myself slipping into self pity. I don't want to be here. Not at all. I used to drive by this shiny new facility, only about 20 minutes from my house, and avert my eyes. I hope I never have to go there, I'd think.

Now here I am.

I feel as though I've slipped into a parallel universe, behind a veil that others don't see. The cancer veil. It's another world behind here, one where the petty concerns of my previous life seem very small indeed. I watch the world rush by on the other side of the veil, a world where people's minds are full of everyday concerns like holiday shopping, meetings, work, errands.

I watch them, and I miss belonging there. Now that I've stepped behind the veil, I don't know that I'll ever inhabit that world of industrious obliviousness ever again.

The doctor pokes his head in, saying "Knock Knock", like they all do. He smiles, introduces himself, and does a quick examination. He tells me to get dressed and calls my husband in for a consultation. He is the medical oncologist; the expert on chemotherapy and radiation, and he will tell us what the next three months of our lives are going to be like.

Keeping a practiced smile on his face, he talks about seven weeks of daily radiation, three doses of chemotherapy, interspersed at weeks one, four and seven. You will lose your hair, he says, slipping this tidbit in amongst the medical stuff. And you will need a feeding tube.

Despair rolls over me like a fog. I can see Steve and the doctor chatting there on the other side of the veil, and I'm grateful he is here, because I'm speechless, lost. I hear the doctor say they will put the feeding tube in - a standard procedure, nothing to be concerned about, just a tube that will be inserted directly into your stomach near your belly button - before the chemo and radiation will even start, because once they start my throat will be too ravaged to eat or drink.

I'm sinking lower, fighting back tears. I grope for gratitude, and I can't find it anywhere. I love my hair, I think. I love food. I don't want to do this.

~~~~~

But of course I will. And I won't do it alone.

Here behind the veil there is an army. I sit in waiting rooms and I glance at my fellow soldiers, some with hair, some without, some wearing bandages or looking weak and pale, but all with a look of determination and courage. They are bruised and battered, but not broken. They fight with all they have, and I will too.

There are incredible nurses with just the right combination of cheer and realism, who possess a compassion and humanity that boggles my mind. They are the generals who lead our army bravely into battle.

There are doctors who perform miracles with their hands and their smarts every day. They are the Chief Executives, the strategists, the ones who refuse to be beaten by this disease.

There are the survivors - there are oh so many survivors - who share their stories of fear, pain, hope and triumph.

You do not meet people like these - the patients, nurses, doctors and survivors - very often on the other side of the veil. Together we do what none of us can do alone.

~~~

We drive home in a stunned silence. My mind is flip flopping between sadness and fear. I have three more scans to endure in the next week - a CT Scan, and MRI and a PET Scan - to complete the "staging process" - a fancy way of saying they will tell me if there is cancer anywhere else.

I push away the fear and search for things to be grateful for, making a mental list: I live close to world class care, I have an incredible support system, it appears my cancer is treatable. This helps a little, but I feel the weight of the veil pressing on me, making it hard to breathe.

Stop fighting and surrender, I think. What happens is not up to you. I close my eyes and think of the army, of the hope and courage they carry in their hearts, and I let go.

57 comments:

I like the term you used "behind the veil". I never thought of it that way but I know the feeling. I remember feeling jealous that people's life's were going forward and I was stuck. I hope for great success in your treatment. Hang in there! You will get through this.

I am praying for you Ellie. I am so sorry you are going through this. Thank you for giving those of us on the other side of the veil a peek into the real life battle of cancer. Huge hugs and good vibes coming your way...

Oh Ellie this just sucks. But like everyone else who has posted, I know you will get through this and come out stronger than ever. When my dad went through treatment for esophageal cancer, it helped him to talk to others who had been through the same thing. That way he knew what to expect from the treatment (not the medical explanation but real words) and that there were people who made it to the other side. My thoughts and prayers are with you, Steve, Greta and Finn. Stay strong!

Hey, Ellie!! I am overflowing with love and hope and prayers for you. Im also a nurse....and you are right. You nurses, docs and fellow patients will lead you, teach you, inspire you and hold you. Just let them. And hold on to your wonderful doc's words... "this is TREATABLE." Ellie, surrender and hang on. THIS TOO SHALL PASS. And after...you and your family will be better, stronger, closer and even more in love. You can do this!! Remember your blessings!! Love from Charleston!! <3 Valary

I was privileged last year to get a glimpse behind this veil as I took Mom for chemo and radiation for lung cancer diagnosed last spring. She was 87, a life-long smoker, so her prognosis was not good ... but she wanted to fight it, so we did. The treatments only bought her some time and she passed away on Christmas Day.

But those months of treatments were a time of great blessing for both of us, to see and become part of this great army, to see it in all its ranks, day by day, bravely, nobly, compassionately carry out its mission of comfort, of healing ... and, for some, of working miracles.

I'm so sorry you have this battle to fight, Ellie, so sorry. But I'm glad for your youth, your strength, your willingness to share, for good reason to hope that you will come through this OK. You are a miracle already! Thank God, there are no limits on the number of miracles that might come our way! When this miracle seems out of reach, let your comrades carry the load. Let them buoy you up with their experience, their expertise, and their love. You are right. You are not alone, at all.

I just sat here reading this and thought "oh, f**k." I don't know what else to say. Everything that comes to mind sounds like platitudes and I want something grittier than that. Something I can grab with my hands and give to you.

Oh my, Ellie, I had hoped that it would not come to this. My 7 weeks of radiation were at the other end, and I didn't have chemo, but it sure took a lot out of me. The kind of funny thing was that for the last week of treatment I had to drive myself into Albuquerque (60 miles each way) because Susannah was just to tired to drive me. I really think that it was harder on her than on me.

Mostly I felt good in the morning and depleted in the afternoon. I just sat there and breathed for a couple of hours. Didn't have much hair on my head to start with, and I didn't lose any there, but all the hair in my arm pits vanished. Don't know if that will work for you or not :). Time to shop for a good wig!

You are going to be on just about the same schedule I was, although they gave me a two week break for Christmas and New Years. I probably needed it, but it did extend the treatment for two weeks.

But it ended, but plan to rest for a considerable time afterward, and I don't mean weeks but more like months. I didn't feel bad, but I sure didn't have any energy.

But then again, you a heck of a lot younger than I am, so I hope that you will sail through this with no problems. And if you need an extra shoulder to cry on, email or call me.

Your post brought tears to my eyes. I'm scared for you but so incredibly proud of your will to let go but not give up. I spent months and months with both of my parents in those rooms. The nurses especially were the most kind and compassioate people I've ever met. The survivors were all an inspiration. The patients and the caregivers all became a little close knit community with each and every trip. It was a blessing to know I wasn't alone, that I wasn't the only one going through it. You can do this Ellie. You are not alone. We are all rooting for you. Lots of love my friend.

Ellie. I have been thinking of you daily...sending prayers to the heavens and just wondering why the hell you have to be someone who must now battle cancer. I don't get it. We barely know each other and we totally know each other and I feel on this journey with you even though we are not in each other's worlds. You know? Your writing of your experience so far has truly moved me, inspired me, and humbles me to try and keep in perspective my " industrious obliviousness." I love that by the way. I keep wondering what I can do....for you. Anything? For now please know I'm thinking of you always and I love your jewelry and wear it ALL the time. xoxo Lee

Quietly cheering from behind the Rockies past Yosemite and the great Central Valley; urging you forward knowing we are here to catch you if that becomes necessary. You will come out on the other side of this: thinner, wiser, more compassionate. It's all good, Ellie.

Ellie - I don't think I've ever posted before, although I subscribe to your feed (I found you through damomma when the two of you did the amazingly beautiful crossover posts), and I am frequently moved by your words. I just wanted to let you know that I, too, and thinking of you, and praying in my own way for your quick recovery. With love, A Reader.

Hi, I'm a new follower to your blog, found you via The EO. My heart is heavy reading your post, it's so beautifully written, but the news is hard to hear. I will keep you in my thoughts and will follow you along on your journey. And yes, it seems you have a very large army behind you rooting you on...I feel like this will have a very happy ending. :)

Thank you for painting such a clear picture of your situation, so we can visualise the needs you have and send our cares and love along to you in prayers for you and the experts helping you. Your determination is so essential in the face of the treatments, and I really hope we can do whatever possible to cheer you along your way. With every form of email affection ? XXXOOO A Christine

I am a new reader and so sorry for what you are going through. I started chemo 3 weeks ago for breast cancer, at age 28. It was a surreal experience walking into the chemo room for the first time but after a bit of crying I got through it. I know there are different drugs for different cancers, I am taking Cisplatin that doesnt make your hair fall out. There are some chemo drugs that dont make you lose your hair and are very effective, you might want to see if any of those would work for you? I had resigned to the fact I would lose my hair and was so upset. When I met with the oncologist for the first time, he told me Id be taking a drug that wouldnt make me lose my hair and I started to cry.Ill be thinking of you, best wishes to you and your family.

I found your blog/post through my friend, Arianne Segerman. Your words have moved me deeply. My mother is a survivor of breast cancer. While I do not understand what your going through, behind the veil, I stand with you in prayer as best I'm able.

Praying for you Ellie. All of us are part your army, ellie's Army- to support you, lift you up, cyber-hug you, cry with you, and laugh with you. YOU CAN DO THIS and YOU WILL DO THIS. Much love and warmth, Lisa

I have such vivid memories of my 6'5" husband curled up in the fetal position in the bathtub crying after his cancer diagnosis. He struggled, we both stayed in shock for awhile (with some PTSD for me), but he won. That bathtub was a lifetime ago. I am sending you buckets of positive vibes and wishing you peace and strength.

Amazing, your strength, whether you feel like it or not.I have done the feeding tube, I have done the IV's and nausea. It was for something completely different, but I spent a lot of time with these soldiers you speak of, and they are strong.You are strong.Prayers and blessings to you.

Ellie, you are never going to be alone in this. I love your description of your army. And we will all be thinking of you. Please continue to write your beautiful posts and keep us updated. You are an amazing warrior.

you know better than many, you gotta take it one day at a time and sometimes even one hour, one minute at a time. Your posts have brought me to tears but I know you can do this. I KNOW you can. I agree, doctors don't bullshit when it comes to this stuff. If he thinks it's treatable it's treatable. just know, I wear your necklaces daily and believe you are a beautiful craftsman and a beautiful woman hair be damned.

Ellie, I'm just catching up on your posts from the past few days. I have tears in my eyes both for your pain and for your fear, but also for your strength and willingness to face this battle. And your gratitude. Oh your gratitude. It's just stunning and such an example for me. You inspire me with your courage; not just in facing this, but also the courage to be vulnerable, to talk about the fear and all the feelings and, most of all, to be brave enough to FEEL them.

Yes, we are an army and will commence shoulder-to-shoulder with you. What a gift you are to us. You have carried so many of us when we could not walk. Now it is our turn. Rest easy, my friend. God's got you.

Ellie, I have wanted to post for so long to tell you how much you have helped me understand addiction and more importantly to have hope that things will get better. I can't thank you enough for your words and for being an inspiration. All good thoughts and prayers are you with you now as you face this battle. You are already being an inspiration and showing your usual strength and grace. Keep talking so we can remind you how many people care about you and are pulling for you.

I just posted with you on Linkedin today after many years, where I saw the link to your story. I only wish the best for you, Steve and your family, and will keep you in my prayers. All the best in your treatment. Bill D.

I can't pretend to understand, but I truly, deeply wish you relief and peace and strength. You've been so helpful to me and so many - I hope you will let us all know if we can be of any help back. Much love.

Wow. That all sounds very scary and really overwhelming - I can't even imagine. Just remember what the doctor said - i.e. the liferaft in these stormy seas. You are going to go through tough times but on the other side you are going to be okay.

Even in the midst of this, you write with beauty and grace. I am sending you good thoughts and prayers for healing. I have a few friends who are experiencing this very thing right now as well. All the best to you.xo

Oh. My. God. Oh Ellie. Oh dear, beloved, brave Ellie. God that sucks. We're here for you. We're here for you. We're here for you. I'm going to send you a care package - I'm going to send it to the address on your Shining Stones business card - if you'd like it sent somewhere else, please email me at melissanurmi (at) gmail (dot) com. My heart and my prayers are with you. You can do this. Just gotta get through it. You are no where NEAR alone. Hang in there.